Our packs are an information source for you. It can be hard to process difficult news at medical appointments.
Here is some helpful information for you to read when you are at home in your own safe space, created by a group of mothers who have traveled this journey and wanted to fill the gaps they found.
Below are some things that you might need to know:
Depending on your baby’s diagnosis, your pregnancy may involve frequent appointments with doctors and specialists along with regular ultrasounds or other tests. You may need to visit the hospital many times. Due to these extra appointments, you and/or your family members may need to take extra time off work. Consider the options available to you in terms of sick leave, carer’s leave, etc.
You may also incur extra costs for things such as medical tests, travel, parking and loss of wages. If you have other children, you may need to arrange child care.
Things to look out for during pregnancy
During a high-risk pregnancy, it is important to look out for the key warning signs, such as fluid loss, blood loss, unusual or abnormal pain and signs of early labour. If you see these signs or if you are concerned, call your hospital’s Pregnancy Assessment Unit number first, and they will decide upon the next point of treatment. Ask your medical professional to advise you if there are any specific signs that you should watch out for.
Later in the pregnancy, once you have started to feel foetal movements regularly, keeping a track of these movements is recommended. There are several apps that you can download, which allow you to monitor the foetal kicks digitally.
Possible early delivery
Depending on your baby’s condition, you could be at a high risk of delivering early. Ask your medical team if there is anything that you can do to minimise the chances of an early labour (things such as bed rest, a cervical stitch or medication). If your baby is born early, your baby’s gestation and weight will determine whether medical professionals need to intervene with medical help for your baby. If your baby is delivered early, they may be taken to NICU. In some cases, this can mean that you are not able to see your baby for several hours after delivery.
NICU (Neonatal Intensive Care Unit)
NICU can be a very frightening and overwhelming place for parents. Your baby’s specific condition will determine the length of stay. Before your baby is born, try to organise a tour and/or see if your hospital has information nights that you can attend. This is vitally important, so that you know where the NICU is, are familiar with the layout, and have had the opportunity to see babies that are there and see the machines that could possibly be used for your baby. Once you have your baby and your baby is in NICU, don’t be afraid to ask doctors and nurses questions. Also ask to assist in your baby’s care as much as possible. This time can be extremely difficult for families, as you can feel as though you are unable to bond with your baby. It can be very frightening to see your baby hooked up to lots of machines.
NICU can be a rollercoaster of emotions, with high and lows. Going home without your baby can be extremely hard. If you have other children, there are other things to consider such as arranging childcare and feeling torn between wanting to be there for your children at home and your baby in NICU.
You may also find it beneficial to seek advice from a lactation consultant. If your baby can’t feed and you need to express, some women find this difficult and frustrating, so it may be helpful to meet with a lactation consultant before your baby is born.
If you have chosen for your baby to go to palliative care after delivery, you may want to spend as much time with your baby as possible. Depending on your baby’s condition, he or she may pass away quickly, or it could be several days, weeks or months. Talk to your medical team as to what facilities they have. Don’t be afraid to personalise this environment. Maybe have a special outfit that you would like to put on your baby, or you might ask to bathe your baby. The options available to you will all depend on your baby’s health.
Religion is a very personal choice. If you are religious, you may want to speak to your Pastor or religious leader to seek advice on any questions that you have. You also may want to have your own Pastor or religious leader to do a Baptism. Talk to your Pastor or religious leader to see if they would come to the hospital if needed.
This can be a very heartbreaking time, and the situation can cause a great deal of stress and anxiety for you and your family. Some feelings that you might be experiencing include shock, disbelief, anxiety, guilt, sadness and anger.
Making decisions during this time can be very confronting and stressful, both for you and for your family. This folder has been created to provide you with information on the different pathways that you can choose. You may wish to use this information to guide the conversations that you have with your partner, family members and medical staff.
When diagnosed, you will most likely be confronted with the decision of whether to continue with your pregnancy or terminate your pregnancy. This is a very personal and individual decision, and there is no right or wrong answer. You may consider your own baby’s diagnoses, your beliefs, religion, and cultural values.
Things you might want to discuss with your medical staff
Ask your doctors all the questions that come to mind, and do not worry about whether you think it sounds silly. If it is important to you – and you think it may prepare you for the decisions that you need to make – then go ahead and ask.
You may find some of the following questions useful to ask your medical staff:
- Is our baby’s condition compatible with life?
- Will our baby survive the pregnancy and birth?
- If so, what medical needs will our baby have in the future?
- How long could our baby survive after being born?
- Is there a possibility that our baby may suffer or be in pain during pregnancy?
Questions you may like to ask yourself, your partner and/or your family members:
- Is your baby’s diagnosis compatible with life? How do you feel about continuing with the pregnancy? How do you feel about termination?
- If your baby’s condition is compatible with life, is it a life that you could support as a family long term?
- If your baby was in NICU (Neonatal Intensive Care Unit) after birth, and you were given the option to turn off life support, how would you feel about such a decision?
- Is there a Pastor or a religious person you would like to speak to, to discuss your
situation and seek advice?
Please note that there are rules about ending a pregnancy in Queensland. The doctors will advise you of the options available.
Choosing to end a pregnancy is an extremely difficult decision. You love your baby and your baby is very much wanted. When you find out your baby’s diagnosis, you may be given a large amount of information to take in. Take your time to make this decision. It needs to be a decision that is right for you and your family. Things that may be considered are your religious beliefs, the quality of life of your baby, your baby’s siblings, and the medical needs of the baby if you continue with the pregnancy. You may also consider how you would tell friends and extended family if you choose to end the pregnancy.
Get as much information as possible from your medical team. Ask for a second opinion. If you feel too overwhelmed to ask questions there and then, ask to schedule an appointment on another day, after you have had a chance to process the news. Ask your medical team about the procedure that would be used to cease pregnancy.
Two different procedures are used, based on the gestational age of your baby.
Surgical termination involves a dilation and curettage, or a dilation and evacuation. Generally, you would be under aesthetic for this procedure. There may be limited options for memories to be captured.
Induction of labour
If your baby is of older gestation age, the labour can be induced. This means that you will go through labour and deliver your baby. This way a family can spend some time with their baby after birth.
Whichever procedure is applicable to you and your baby, you may want to read the section “What if my baby dies?”, as it is important that you prepare yourself, and that you find ways to create memories.
Counselling and practical support
When deciding to cease your pregnancy, the facility should provide you with counselling. You may want to seek extra counselling for you and your family, especially if there are conflicting beliefs about ending the pregnancy.
Depending on your hospital, a social worker may be assigned to you and your family. You should also talk to your family members or close friends to see what they can do to help. They may be able to help you with things such as cleaning, cooking and help with any siblings. You may also want to look at joining a support group for parents who have been through a similar experience.
If your baby passes away, you may want to request that an autopsy is done. This can provide you with some answers about your baby and their diagnosis. It can also give you information from medical professionals which may be useful for future pregnancies.
Some things to consider:
- You can request a full or a partial autopsy. If you do choose a partial autopsy (i.e., you select only certain areas of the body that are to be included), please be aware that your results may be limited.
- The results can be overwhelming and many pages long. There are things on the autopsy that only medical professionals are likely to understand. If you have any questions or concerns, ask your doctor to explain.
- Sometimes the results may not provide the answers that you had hoped for. Sometimes they can have more information or less information than you had expected.
- When you receive the results in the mail, have someone close by so that you are not reading them alone. They can be upsetting and overwhelming at times.
- It can take from 6 weeks up to 12 months to get any results from an autopsy. This can be frustrating for families who just want answers. You can phone the hospital, but unfortunately they are not always able to give you a definite timeline on when the results will be available.
- Be sure that your address and current doctor details are kept up to date with the hospital, so that the results can get to you as quickly as possible.
Being told that your baby is going to die is an extremely difficult and emotional time for a family. There is no way to prepare yourself. The following ideas may be useful for you to consider:
- Spend time with your baby. This is a very important time for you and your family.
- Take photos.
- Bath your baby and organise a special outfit for your baby.
- Make memories with your baby. You can get hands and foot prints, or moulds done.
- If your baby has enough hair, cut a lock off. This means you will always have a part of your baby with you. A lock of hair is also something you can touch later in life.
Leaving hospital without your baby
Leaving the hospital without your baby can be difficult, and very confronting. You may feel heartbroken, lost or like you have abandoned your baby. If you can, arrange for a family member to park your car at the door, and have another family member stay and help you pack your items. This way, you will not be sitting in a waiting room watching people come to visit other parents, which can be upsetting.
Organising a Funeral
Organising a funeral can be very difficult, and you may not know where to begin. Your hospital may be able to give you information on local funeral homes that you could use. Your first decision will be whether you want a burial or a cremation. This is a very personal decision, and it may be one that you want to discuss with family members.
Don’t be afraid to personalise your baby’s funeral. Some things that you may like to consider are:
- Butterfly release.
- Balloon release.
- Slide presentation of photos that you took.
- Everyone that attends wears a certain colour.
- Instead of flowers they can donate to a charity in memory of your baby.
Due to the uncertainty of your pregnancy, you may want to take the time to create special memories with your baby while you are pregnant. This will be a keepsake for you and your family to treasure.
Here are some things that you can do:
- Have a pregnancy photoshoot.
- Get a tummy mould.
- Start a journal and document your baby’s movements and appointments.
- Have a baby shower for your baby to celebrate your pregnancy.
- Create an album of all your ultrasound photos.
- Get a 3D ultrasound and a video of your ultrasound.
- Buy your baby an outfit.
Creating Memories after Birth
- Hands and feet moulds.
- Photos of baby.
- Memory quilt.
- If baby has lots of hair, cut some hair off as a keepsake.